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Monday, March 10, 2014
On this journey Dr. Mikovits would face the scientific prejudices against CFS, wander into the minefield that is autism, and through it all struggle to maintain her faith in God, the American justice system and the profession to which she had dedicated her life. This is a story for anybody interested in the promise and peril of science at the very highest levels in our country.
The book is being released by Skyhorse Publishing on May 6, 2014. The authors hope the story will enlighten, challenge, and bring clarity to the efforts of Dr. Judy Mikovits, as well as lead to answers for the millions who suffer from these chronic diseases. Please visit the website at: www.plaguethebook.com
Friday, March 7, 2014
Wednesday, March 5, 2014
Tuesday, March 4, 2014
What would you do, how would you feel, if you saw 26 years of stonewalling instead of progress toward helping you feel better? I see a quarter-century of patients' lives wasted, time we'll never get back. I see friends dying -- some of the disease and some of suicide when they've lost all hope.
The cure rate for cancer in that time frame has gone up exponentially. The cure rate for ME/CFS remains zero. Zip. Nada. Llewellyn King notes: "Physicians who treat ME/CFS have told me that they would rather have cancer than this disease. One epidemiologist said, "With cancer, you are cured or you die. ME/CFS just goes on and on. You live the life of a zombie."
From a physician devoted to treating and researching ME/CFS, this is not only a terrible admission, but also a de facto indictment of the national effort to find a cure, or even a therapy, for alleviating the suffering."
And you think there's a bright side of this that I should be looking at?!
Monday, March 3, 2014
ME is most similar in nature to another neurological illness, Multiple Sclerosis. ... If you hear someone who claims to have had ME and is now functioning at 100% normal again, chances are extremely high they never had ME to begin with.
... That said, anyone who spends any significant amount of time studying the true nature of this illness will see the tremendous amount of damage it does to multiple body systems. It makes sense that this damage would have a shortening effect on most ME patients' lives. For example, Dr. Elizabeth Dowsett says of ME patients, "20% have progressive and frequently undiagnosed degeneration of cardiac muscle which has led to sudden death following exercise."
Sunday, March 2, 2014
By Llewellyn King
The federal government has a mostly open dialogue with those it serves and those who serve it. This happens pretty well across government agencies, from the Pentagon to the Department of Transportation to the Department of Agriculture.
So it is troubling that the National Institutes of Health, an arm of the Department of Health and Human Services, appears to have no communication with a critical but ignored patient cohort: those suffering from Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome, and often referred to only as ME/CFS. NIH does not appear to hear the cries of the petitioners at its door; it seems to be interested only in classifying and defining the disease.
According to the Centers for Disease Control, ME/CFS afflicts 1 million people in the United States, and 17 million people around the world. While those numbers of victims are disputed, their suffering is not; they are ill in a terrible way.
ME/CFS takes healthy -- often athletic -- people and casts them into a shadow world of physical incapacity, mental fog, loneliness and relentless dependence on others. The suffering is measured in years and decades. Suicide is common.
It is a disease of the immune system, but what triggers it is unknown. Physicians who treat ME/CFS have told me that they would rather have cancer than this disease. One epidemiologist said, "With cancer, you are cured or you die. ME/CFS just goes on and on. You live the life of a zombie."
From a physician devoted to treating and researching ME/CFS, this is not only a terrible admission, but also a de facto indictment of the national effort to find a cure, or even a therapy, for alleviating the suffering.
One of the problems affecting ME/CFS treatment is diagnosis. There are no biological labels, known as markers, that enable doctors to easily identify ME/CFS; it cannot be picked up in a blood tests or a urine sample. It is a ghostly manifestation, and doctors fall back on what is known as wastebasket diagnosis. In its simplest form, this means testing for a lot of diseases and if it does not turn out to be one of them, it could be ME/CFS.
But one case definition has satisfied the ME/CFS community in recent years, and it is endorsed by specialists in the field. Established in 2001, it is called the Canadian Consensus Criteria.
Yet, incomprehensibly, the NIH is spending some of the paltry $6 million devoted to ME/CFS, on a study to come up with a new case definition for the disease; something that no one wants and which could do real harm.
To do this work, the NIH selected the Institute of Medicine (IOM), which has no expertise in ME/CFS and which had drawn opprobrium with its clumsy attempt to do a case definition of Gulf War Syndrome.
The NIH, which has failed to explain itself in plain English, has ignited incandescent rage in the patient community and from patient advocates. In a unique outpouring of objection, 50 of the world's top doctors and clinicians wrote to Secretary of Health and Human Services Kathleen Sibelius, pleading with her not to muddy the waters and to stay with the definition which is working well. The NIH went ahead with the IOM contract.
So lacking is government support, moral as well as financial, that the research community, including dedicated physicians such as Andreas Kogelnik of Mountain View, Calif., Daniel Peterson of Incline Village, Nev., and Derek Enlander of New York City, feel they have to raise funds privately to continue their work. Even celebrity virus hunter Ian Lipkin of Columbia University has abandoned hope of getting his seminal work funded by the NIH and has joined the researchers who have had to hold out begging bowls to the public to do their research.
Judging by social media, the entire patient community is in a state of metaphorical war with the NIH.
There is a cry from and on behalf of the pitiable sick for action, sympathy and even courtesy from the bureaucrats in Bethesda, where the NIH is headquartered. The Hippocratic Oath says, "first do no harm." When people are in pain and despair, inaction is palpable harm.
A congressional hearing is needed to investigate decision-making in the NIH, find out about its budget request to the Office of Management and Budget, and to demand that it listen to those who suffer and those who are trying to help them.
Llewellyn King is executive producer and host of "White House Chronicle" on PBS. He is the creator and co-host of ME/CFS Alert on YouTube. His e-mail is firstname.lastname@example.org.
Let's get one thing straight: in most cases, cancer is no longer an automatic death sentence. You have surgery, endure a few months of chemo/radiation, and life goes on pretty much as before. As opposed to ME/CFS, where there's no surgery, no treatment, and life never goes back to normal because you're never able to do what you used to. Even at my best stage of remission, I never got back to more than about 85% of my old self.
Thursday, February 27, 2014
A medical mystery is deepening in California, where state health officials
now say reports of polio-like illnesses that have left as many as 25
children with paralyzed limbs don't appear to be connected.
It's not clear what may be behind the rash of acute infections first
reported Sunday by researchers in a presentation for the American Academy of
Neurology's annual meeting. Tests of 15 of 20 cases submitted by doctors and
researchers have come up empty, according to Dr. Gil Chavez, state
epidemiologist for the California Department of Public Health.
"Thus far, the department has not identified any common causes to suggest
that the cases are linked," he said in a statement. "The investigation is
But that only heightened the resolve of the parents of 4-year-old Sofia
Jarvis, who was the first to be identified as part of the series of
unexplained cases of sudden paralysis in kids ages 2 to 16.
She was barely a toddler two years ago when she was stricken with flu-like
symptoms and trouble breathing — and later realized she couldn't move her
left arm. An MRI later confirmed that she had a spinal cord lesion that was
... "We're seeing them throughout California," he said. "The farthest north is
in the Bay Area and the farthest south is in San Diego."
Van Haren and colleagues from the University of California, San Francisco,
suspect that the illnesses may be caused by a virus, possibly a type of
enterovirus, the same family of virses as poliovirus.
Two of the children in the early reports showed signs of infection with
human enterovirus-68, which has previously been associated with polio-like
symptoms. HEV-68 is a rare form of very common enteroviruses, which cause
between 10 million and 15 million infections in the U.S. every year,
according to the Centers for Disease Control and Prevention.
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